Considering Residential Options: Two Moms Share Their Stories
Two of our Autism Resource Specialists shared their experiences in choosing residential options for their children. Wanda Curley’s son, Ryan, is 24 years old and Judy Smithmyer’s daughter Adele is 34. They both live in homes for individuals with autism.
When did you each start planning for your child’s move from your home?
WC: My husband and I knew early on that Ryan was going to need substantial supports to live as independent and productive a life as possible. We also recognized the sad reality that we would not be here forever. We know that his sister, who is 21 now, will more than likely play a huge role in providing support for and in advocating for Ryan once we are gone, but as his parents, we wanted to set things in place while we were still able to do so. Our original plan to start searching for residential options once Ryan became a young adult was put into motion earlier than we anticipated when he went into crisis during his mid-teens. JS: My husband and I knew from fairly early on that Adele would require care her entire life. Because of the severity of her differences, we were brought to this decision sooner than we would have liked. We started researching options in our county through our managed-care organization (MCO). Adele was about 13 when I first started researching group homes and filling out applications.
What were your concerns? What feelings did you experience? WC: I think my biggest concern at first was that Ryan would not be nearly as happy going into a residential setting as he had been at home with us. But my husband and I have come to realize that it would be good for Ryan to have some of the same independence that all young adults experience. It was hard to “let go” so to speak, but seeing him thrive in a residential setting the past few years has given me confidence that many other people do love and care about him and will stand alongside him to help him have the best life possible. JS: Our concerns were very much for Adele’s safety and well-being. But as her mother, I was more disappointed in myself that I felt I couldn’t “do it all” for her anymore. I had to come to the realization that I would be a better mother to her if I accepted help from others 12 • The Spectrum, Winter 2017
in areas that I wasn’t able to control and deal with, such as her behavioral issues. Adele also had a younger sister, and this was taking a toll on her. Once I got over the “control issue” and saw that I could still be very involved in the decision-making for Adele and see her whenever we wanted to, it became easier to deal with.
What types of residences did you consider and how did you research them? WC: We looked at almost all of the appropriate options recommended to us, from intermediate care facilities (ICFs) to alternative family living (AFL) to homes for developmentally disabled individuals with 24/7 supervision. We wanted to envision Ryan in every option so that we could know we had made the best decision. We also went online to research group homes and we took as many tours as we could. As we connected with different agencies, we asked for references and spoke with families. We made a very specific list of questions to ask and compiled lists of the “pros” and “cons” of each option. Although our son was unable to share his living preferences, our biggest desire was to choose a setting that we felt he would choose. JS: Because we had a case manager at the time, we were able to get information on types of facilities available. My husband and I also visited different group home settings (children’s homes, adult DDA homes and ICF-IDD homes). We even met with an AFL provider and let Adele spend an afternoon with a proposed family. Also, even though Adele was a teen at the time, I applied to adult ICF-IDD settings and spoke with their directors to give me an idea of how those were run and what I could expect.
How did you prepare your children for their new living situations? WC: I would advise families to take their child to visit their new home at least once. In our case, the staff from Ryan’s new setting met with him to get to know him, spoke with us as needed, and got advice from the professionals who worked with him. We made a social story book that included pictures of his new home and described it in great detail. We also made sure that the social story included that we would visit frequently and that he could talk to us on the phone whenever he wanted. PREPARATION is key! Ryan transitioned to his current setting at age 18. It went extremely well for him, and because of that, it went well for us.